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I Have a Voice

@disabledfeministvoice / disabledfeministvoice.tumblr.com

I'm a het cis woman (she/her) in my 40s with severe ME/CFS SCREAMING from my bed at the injustice in the world. (Okay, maybe 80% screaming, 20% fandom and cute dog pictures.) Trigger warnings: gun control, racism, ableism, homophobia, sexism, 2016 election. ..

May I have a song for Hermione and Fleur? Thank you! (Also, I know almost nothing about Taylor Swift's music so whatever you send me will be almost certainly be new to me! I just cannot resist how creative this fest is!)

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we love that you joined us with this open heart!

Your Ship: Fleur x Hermione

Your Song: White Horse

enjoy <3

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Title: Face of an Angel Pairing: Fleur/Hermione Rating: T Tag: Facial Scarring, Breakup, Pre-Femslash Fleur gets scarred by Greyback instead of Bill. She thinks he’ll be able to handle it, but he can’t. https://archiveofourown.org/works/39944337

Do you or like anyone else with Cfs (and or fibro) like have peculiar sleeping patterns? I'm constantly exhausted with the Cfs but I can pretty much only sleep between 11 pm-11 am. I can't take naps at all, and if I do it upsets my GERD and releases tons of acid. I've never been able to understand why I can't take naps like so many other people can especially when I'm so freaking exhausted

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OMG Yes.  Welcome to my crappy little club.  I honestly get my best sleep between 6 am and 1 pm.  But it always takes me at least an hour to get out of bed and then like an hour just to be functional and starting my day at 3 or 4 sucks so much, I keep trying to force myself into normal sleeping patterns.  But if I got to bed before midnight, I just wake up at 3 like I’ve had a nap and am ready to go.

The only times I can nap is if I am truly and utterly exhausted.  And then it’s less of a nap and more a matter of me passing out for a few hours.  Usually after doctor appointments or days I have to get up early.  I cannot nap and I really should.  But also when you get up after 2, a nap has to be around 6 and that seems like it’s too late in the day.  (Even thought I don’t go to bed until 2 or 3. 

And I haven’t been diagnosed with GERD, but I can only sleep in one position or I wake up choking on stomach acid or vomit.  (I hope that’s not too gross.)  I have to sleep mostly on my stomach but kind of tilted up on a pillow under my left side.  Like my pillow is a stuffed animal and I am hugging it under my body.  I mean I don’t know if that would help you at all, but it’s the only thing that has worked for me.

The thing I’ve come to realize is that sleeping, just like anything else, takes energy.  Your body has to produce certain chemicals and go through a process just like everything else.  So with CFS and not having enough energy, I think that just interrupts things even worse.

A lot of CFS and Fibro is defined with “unrefreshing sleep” meaning even when we do sleep, we don’t get down far enough to the level of sleep the body needs to be at in order to repair itself. I think sleep is one of the biggest problems CFS patients have.

I’m sorry you are struggling with this, I hope you are able to find some things that help you soon and try not to beat yourself up for a sleep schedule that you cannot control.  Fatigue is not the same as tired or sleepy.  And having fatigue doesn’t mean you automatically should be able to sleep.  I mean if you could sleep whenever you wanted, you probably wouldn’t be dealing with the fatigue anyway.

Lots of hugs (if you want them),

Admin J

Followers, any other comments?

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Get checked out for sleep apnoea, especially if you snore. The stomach acid choking thing is one of the symptoms. You don’t have to have a full sleep study for it - they can just send you home with a wrist band and a thing to clip over your finger. 

I have ME/CFS and never thought anything would improve my sleep, but getting my sleep apnoea treated (I have to wear a CPAP mask when I sleep) has made a HUGE difference! Every time I slip up and don’t wear the mask, (which is hardly ever these days) I wake up coughing. It’s kind of weird having a disease that can be easily diagnosed and treated and that every doctor believes in though...

Kick-A** Disability Pride Flag: Let’s do this!

Seriously. Let’s make this A Thing that We Made.

My idea: reblog this post, and add your comment saying what you want the flag symbols to represent, and put “Disability Pride” and “flag” somewhere in the tags – either in all one tag, two tags, both, whatever.  If you have an idea for a flag, and you can already see it, hoisted on a flagpole in you imagination, describe it.

Even if it takes a while to actually come up with a good flag design, we can use this post as an anthology of things to be proud of, as Disabled People.

Here are the five basic principals of Good Flag design (From “Good Flag/Bad Flag,” published by the North American Vexillological Association [NAVA]):

1. Keep it simple.
2. Use meaningful symbolism.
3. Use 2-3 basic colors from the standard color set {red, yellow, blue, green, black, and white}
(aside: the Gay, Transgender, Bi- and Ace flags all break this rule, and I think they are stronger for it, because the symbolism is so strong – and also it’s a sign that they are flags of personal, rather than governmental, identity).
4. No lettering or seals. (aside: So. Much. This. Especially since dyslexia is a disability)
5. Be distinctive or be related.

As noted in that video I posted yesterday, a flag that’s 3 feet by 5 feet (1 by 1 ½ meters), seen from a hundred feet away, will look like a 1 by 1.5 inches (2.5 by 3.8 cm) rectangle, so if you want to doodle a design, that’s a good size to work in.

Okay? Ready … Set … Imagine!

Thank you for reblogging this, @deafholtzie!  In the meantime, I’ve been thinking about this (and the attack at #Sagamihara spurred me to come up with something) and here it is:

[Image description: A black flag diagonally crossed from the top of the hoist to the bottom of the fly by a four-color “Lightning bolt” in stripes of blue, gold, green and red (three long sections running from hoist to fly, alternating with two short sections from fly to hoist),  Description ends]

And here is the interpretation:

1) The black field

  • Is the color of mourning (in the Western world), for all the victims of “mercy killing”.
  • Is the color of the “Black Triangle” badge the Nazis used to mark prisoners of concentration camps who were unable to work; these people were killed first. It’s now also the symbol of protest for the U.K.’s Disability Rights movement
  • Is the color of the pirates’ “Jolly Roger” flag

2) The Lightning Bolt/Zigzag

  • Represents how Disabled people have to navigate around barriers
  • Represents breaking free from Normate Authority dictating our lives, and controlling our bodies

3) The colors:

  • Blue: Mental Illness (Depression, Anxiety, PTSD, Psychosis, etc)
  • Gold: Intellectual/Cognitive Disability (Autism, Down Syndrome, ADHD, etc.)
  • Green: Sensory Disability (D/deaf, Blind, etc.)
  • Red: Physical Disability (Mobility Impairment, Disfigurement, Pain/Fatigue, etc.)

Okay, wow, this is awesome! 

Some questions…

1. How were the colours chosen for the lightning bolt? Randomly? Or is there a method?

2. Blue being the typical colour of the wheelchair symbol, wouldn’t it go better with mobility and physical disability? (Disclosure: I am a wheelchair user, who is also autistic and mentally ill. I don’t know of any particular colours for any type of disability other than mobility.)

3. What would it look like if the top half of the flag was white instead of black, perhaps to symbolise true accessibility?

4. Are you flying or wearing this flag anywhere yet? I want to get patches made for my denim jacket, and I’m sure there are Etsy sellers who can do that! :)

I really really love this. Tell me more! I will wear this!

Thank you!

Some answers:

1, 2, & 3: There was, in fact a method to choosing the colors, thusly:

In the historical tradition of flags, around the world, Red is recognized as the color of the body/blood, and so that’s the color I chose for physical disabilities (since blue as a color for the wheelchair access symbol is 20th century/U.S. centric),

Blue is traditionally the color of the intellect (through its symbolic connection to the sky) , and would ordinarily have been the color for intellectual/cognitive disabilities – But – it’s also a color that’s been hijacked by the hate group Autism $peaks, and I did not want to create any unintentional endorsement of those bigots.

So instead I switched to Gold for intellect, because of its symbolic connection to the sun, and used Blue to symbolize emotional regulation disabilities (because of “The Blues” in English idiom, and sky blue is the color of happiness in Russia – in any case, it’s an emotional color). 

And  Green was what was left over, out of the 5 traditional flag colors.

I thought, in my original drafts of the design, that I would include a white field to represent access and black bars or a black cross through the middle to repressent barriers.  But then I realized that, if this flag were hoisted on flagpole and the wind was still, or low, large areas of white would look too much like the flag of “Surrender” – and oh, HELL NO!! NEVER!!! So I nixed white.

4: Not flown anywhere, yet (except in my Tumblr avatar). But I do want to put this on stuff in my Zazzle store, soon (probably after NaNoWriMo).  And yes, please – I’m putting this out for public use.  Etsy crafters, Redbubble tee-shirt designers, Deviant Artists: have at it!

I’m so excited about this flag I DREAMT about it!!!! I had it made up on Spoonflower fabric and used it everywhere. Do you have a hi-res version of the image? :)

Kick-A** Disability Pride Flag: Let’s do this!

Seriously. Let’s make this A Thing that We Made.

My idea: reblog this post, and add your comment saying what you want the flag symbols to represent, and put “Disability Pride” and “flag” somewhere in the tags – either in all one tag, two tags, both, whatever.  If you have an idea for a flag, and you can already see it, hoisted on a flagpole in you imagination, describe it.

Even if it takes a while to actually come up with a good flag design, we can use this post as an anthology of things to be proud of, as Disabled People.

Here are the five basic principals of Good Flag design (From “Good Flag/Bad Flag,” published by the North American Vexillological Association [NAVA]):

1. Keep it simple.
2. Use meaningful symbolism.
3. Use 2-3 basic colors from the standard color set {red, yellow, blue, green, black, and white}
(aside: the Gay, Transgender, Bi- and Ace flags all break this rule, and I think they are stronger for it, because the symbolism is so strong – and also it’s a sign that they are flags of personal, rather than governmental, identity).
4. No lettering or seals. (aside: So. Much. This. Especially since dyslexia is a disability)
5. Be distinctive or be related.

As noted in that video I posted yesterday, a flag that’s 3 feet by 5 feet (1 by 1 ½ meters), seen from a hundred feet away, will look like a 1 by 1.5 inches (2.5 by 3.8 cm) rectangle, so if you want to doodle a design, that’s a good size to work in.

Okay? Ready … Set … Imagine!

Thank you for reblogging this, @deafholtzie!  In the meantime, I’ve been thinking about this (and the attack at #Sagamihara spurred me to come up with something) and here it is:

[Image description: A black flag diagonally crossed from the top of the hoist to the bottom of the fly by a four-color “Lightning bolt” in stripes of blue, gold, green and red (three long sections running from hoist to fly, alternating with two short sections from fly to hoist),  Description ends]

And here is the interpretation:

1) The black field

  • Is the color of mourning (in the Western world), for all the victims of “mercy killing”.
  • Is the color of the “Black Triangle” badge the Nazis used to mark prisoners of concentration camps who were unable to work; these people were killed first. It’s now also the symbol of protest for the U.K.’s Disability Rights movement
  • Is the color of the pirates’ “Jolly Roger” flag

2) The Lightning Bolt/Zigzag

  • Represents how Disabled people have to navigate around barriers
  • Represents breaking free from Normate Authority dictating our lives, and controlling our bodies

3) The colors:

  • Blue: Mental Illness (Depression, Anxiety, PTSD, Psychosis, etc)
  • Gold: Intellectual/Cognitive Disability (Autism, Down Syndrome, ADHD, etc.)
  • Green: Sensory Disability (D/deaf, Blind, etc.)
  • Red: Physical Disability (Mobility Impairment, Disfigurement, Pain/Fatigue, etc.)

Okay, wow, this is awesome! 

Some questions...

1. How were the colours chosen for the lightning bolt? Randomly? Or is there a method?

2. Blue being the typical colour of the wheelchair symbol, wouldn’t it go better with mobility and physical disability? (Disclosure: I am a wheelchair user, who is also autistic and mentally ill. I don’t know of any particular colours for any type of disability other than mobility.)

3. What would it look like if the top half of the flag was white instead of black, perhaps to symbolise true accessibility?

4. Are you flying or wearing this flag anywhere yet? I want to get patches made for my denim jacket, and I’m sure there are Etsy sellers who can do that! :)

I really really love this. Tell me more! I will wear this!

The weaponizing of “inerrant” biblical clobber-texts as the ultimate authority is ... a relatively recent development. It had to be — this approach to the Bible, this use of the Bible, simply was not possible for English-speaking Christians until the 17th century, when English translations of the Bible were finally able to be mass-produced. But the invention of this idea also required a second ingredient — a massive, howling injustice in need of rationalization.
Those things arrived at nearly the same time with the publication of the King James Bible and the beginning of the trans-Atlantic slave trade.
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Adult things arent NEARLY as complex as I thought they were growing up I just walked into bank of america and said im here to open a checking account and they said ok and opened me a checking account

If you have anxiety about being an adult, it may help to think of adult things as basically just doing a lot of quests.

Me: [googles “where do i get a passport”] Me: [goes to that building] Me: [asks first person I encounter] Where do I get a passport? Them: Third floor, room twelve. Me: [goes to that room] Me: [asks first person I encounter] Where do I get a passport? Them: That desk over there. Me: [goes to that desk] Me: Where do I get a passport? Them: Fill out this form. Me: [thinking] Silver key opens the garden gate, in the garden is the red key, which opens the red door, there’s a boy in the red house who tells you his dog is trapped in the old abandoned barn and can I please rescue him…

being an adult is a serious of fetch quests and waiting in lines

*gets eaten by a grue*

Dear Able Bodied,

You saw me out of bed in my own flat recently and said, “It’s nice to see you up and about.”

Up and about’ isn’t me moving between my bedroom and bathroom. ‘Up and about’ would be me at the art gallery, the newly reopened amusement park, the beach, the high street. Heck, even the pound store. It would be me somewhere outside these walls for something other than a medical appointment.

Do you realize how casually you move through the world? How easily? You can impulsively just… go somewhere. Anywhere. Whenever. For me? It takes a healthier than normal day and an amount of preparation that suggests an overseas trip rather than a day out. Wheelchair. Water bottle. Asthma inhaler. Emergency meds. Awareness of all of the disabled parking spaces and ramps in the location. Additional proactive painkillers for me, because sitting up in a wheelchair for a few hours is an incredible amount of exertion for someone who is barely able to sit up for meals on a normal day. Additional proactive painkillers for my husband, because pushing a wheelchair for a few hours is an incredible amount of exertion for someone with osteoarthritis. A plan for several days of rest and recuperation afterwards. (How does a normally bedridden person rest more? Could you even tell from the outside, from your casual glance, the difference between ‘bedridden but alert and communicative’ and ‘bedridden and too exhausted to talk, think, read, watch tv, interact with the outside world’?)

But I went to the toilet in my own flat. So I was ’up and about’.

That was ’nice’.

Sincerely,

Disabled and Chronically Ill

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I’m mobile…most of the time, but never without pain. I had to run today to help keep my daughter from falling face first into deep water. I’m sure my family behind me was thinking…see, she can run….

I have a friend who likes to jog and was trying to explain why and eventually said, “We’ll you know.” I told her that no, I don’t know. At can’t remember at this point a time in my life (at least as far back as high school) that running didn’t hurt. It was never fun. As we talked I explained about bad knees since I was in my teens that felt like grinding fire. Ankles and feet that swelled as I walked and threw my balance off. Pain in every joint in my body from the jolt of my foot landing hard on the ground when I tried to run. I can’t honestly remember a time since I was probably an early tween when running was running was pain-free.

But I still, dream of a day that I can run- Heck I would settle for a fast walk -That didn’t hurt. A day where I could spend the whole day on my feet and not dread the pain and fatigue that is sure to consume me.

Dear Able Bodied,

You saw me out of bed in my own flat recently and said, “It’s nice to see you up and about.”

Up and about’ isn’t me moving between my bedroom and bathroom. ‘Up and about’ would be me at the art gallery, the newly reopened amusement park, the beach, the high street. Heck, even the pound store. It would be me somewhere outside these walls for something other than a medical appointment.

Do you realize how casually you move through the world? How easily? You can impulsively just… go somewhere. Anywhere. Whenever. For me? It takes a healthier than normal day and an amount of preparation that suggests an overseas trip rather than a day out. Wheelchair. Water bottle. Asthma inhaler. Emergency meds. Awareness of all of the disabled parking spaces and ramps in the location. Additional proactive painkillers for me, because sitting up in a wheelchair for a few hours is an incredible amount of exertion for someone who is barely able to sit up for meals on a normal day. Additional proactive painkillers for my husband, because pushing a wheelchair for a few hours is an incredible amount of exertion for someone with osteoarthritis. A plan for several days of rest and recuperation afterwards. (How does a normally bedridden person rest more? Could you even tell from the outside, from your casual glance, the difference between ‘bedridden but alert and communicative’ and 'bedridden and too exhausted to talk, think, read, watch tv, interact with the outside world’?)

But I went to the toilet in my own flat. So I was ’up and about’.

That was ’nice’.

Sincerely,

Disabled and Chronically Ill

Finalizing Plans with New People

Me: So what are the deetz for next Friday?
Able-Bodied Person: Haha idk its like way too soon to figure all that out! :P
Me: *internalizing stress about booking transportation while worrying about the weather and questioning who's going to meet me and if I can go out that long without having to pee and if the place is accessible or not..etc*
Me:....
Me: lolz cool cool cool
…often women aren’t allowed to be characters in history, they have to be stereotypes. Cleopatra was a poet and a philosopher, she was incredibly good at maths; she wasn’t that much of a looker. But when we think of her, we think: big breasted seductress bathing in milk. Often, even when women have made their mark and they are remembered by history, we are offered a fantasy version of their lives.

Dr. Bettany Hughes on women’s absence from history, and the ways historians need to actively put women back into the narrative.  (via thepoliticalnotebook)

[Image Descriptions:

All slides have a light blue background, and the text is written in blue rectangles with rounded corners.

Slide 1: The title is in white text inside a dark blue circle that is centred in the slide.

Sensory Overload And how to cope

Slide 2: The header is in a dark blue rectangle and white text, and the body is in a pale blue rectangle and black text.

Sensory overload has been found to be associated with disorders such as:

  • Fibromyalgia (FM)
  • Chronic Fatigue Syndrome (CFS)
  • Post Traumatic Stress Disorder (PTSD)
  • Autistic spectrum disorders
  • Generalized Anxiety Disorder (GAD)
  • Synesthesia

Slide 3: The text is in three pale blue rectangles that go horizontally across the slide. All use black text. The last rectangle has four smaller dark blue rectangles with white text inside it for the four points. The text is centred in all of the rectangles.

Sensory overload occurs when one (or more) of the body’s senses experiences over-stimulation from the environment.

Basically it feels like everything is happening at once, and is happening too fast for you to keep up with.

Sensory overload can result from the overstimulation of any of the senses.

Hearing: Loud noise or sound from multiple sources, such as several people talking at once.

Sight: Bright lights, strobe lights, or environments with lots of movement such as crowds or frequent scene changes on TV.

Smell and Taste: Strong aromas or spicy foods.

Touch: Tactile sensations such as being touched by another person or the feel of cloth on skin.

Slide 4: A heading in two light blue rectangles with black text, followed by a table with a dark blue first row that has white text, and then alternating pale blue and white rows with black text. (The table is not really a table, it is just a four-column list.)

Obviously, everyone reacts in differently to sensory overload.

Some behavioural examples are:

Irritability — “Shutting down” — Covers eyes around bright lights — Difficulty concentrating Angry outbursts — Refuses to interact and participate — Covers ears to close out sounds or voices — Jumping from task to task without completing Overexcitement — Low energy levels — Difficulty speaking — Compains about noises not effecting others High energy levels — Sleepiness/fatigue — poor eye contact — Overly sensitive to sounds/lights/touch Fidgeting and restlessness — Avoids touching/being touched — Muscle tension — Difficulty with social interactions

Slide 5: The header is in a dark blue box with pointy corners and white text. The body is in a pale blue box with pointy corners and black text.

There are two different methods to prevent sensory overload: avoidance and setting limits:

  • Create a more quiet and orderly environment - keeping the noise to a minimum and reducing the sense of clutter.
  • Rest before big events.
  • Focus your attention and energy on one thing at a time.
  • Restrict time spent on various activities.
  • Select settings to avoid crowds and noise.
  • One may also limit interactions with specific people to help prevent sensory overload.

Slide 6: This looks the same as the last slide except the text in the header is black.

It is important in situations of sensory overload to calm oneself and return to a normal level.

  • Remove yourself from the situation.
  • Deep pressure against the skin combined with proprioceptive input that stimulates the receptors in the joints and ligaments often calms the nervous system.
  • Reducing sensory input such as eliminating distressing sounds and lowering the lights can help.
  • Calming, focusing music works for some.
  • Take an extended rest if a quick break doesn’t relieve the problem.

Slide 7: Four light blue rectangles with rounded corners, stacked one above the other, with black text.

What if someone you know is experiencing sensory overload?

Recognize the onset of overload. If they appear to have lost abilities that they usually have, such as forgetting how to speak, this is often a sign of severe overload.

Reduce the noise level. If they are in a noisy area, offer to guide them somewhere more quiet. Give time to process questions and respond, because overload tends to slow processing. If you can control the noise level, for example by turning off music, do so.

Do not touch or crowd them. Many people in SO are hypersensitive to touch - being touched or thinking they are about to be touched can worsen the overload. If they are seated or are a small child, get down to their level instead of looming above them.

Slide 8: Similar to previous slide, only with three rectangles instead of four.

Don’t talk more than necessary. Ask if you need to in order to help, but don’t try to say something reassuring or get them talking about something else. Speech is sensory input, and can worsen overload.

If they have a jacket, they may want to put it on and put the hood up. This helps to reduce stimulation, and many people find the weight of a jacket comforting. If their jacket is not within reach, ask them if they want you to bring it. A heavy blanket can also help in a similar way.

Don’t react to aggression. Don’t take it personally. It is rare for someone who is overloaded to cause serious harm, because they don’t want to hurt you, just get out of the situation. Aggression often occurs because you tried to touched/restrained/blocked their escape.

Slide 9: Similar to previous slide, only with two rectangles instead of three.

When they have calmed down, be aware that they will often be tired and more susceptible to overload for quite awhile afterwards. It can take hours or days to fully recover from an episode of sensory overload. If you can, try to reduce stress occurring later on as well.

If they start self-injuring, you should usually not try to stop them. Restraint is likely to make their overload worse. Only intervene if they are doing something that could cause serious injury, such as hard biting or banging their head. It’s a lot better to deal with self-injury indirectly by lowering overload.

Slide 10: The header is in a dark blue rectangle with white text, and the other text is in a row of five dark blue circles with white text. The text is centred in all shapes.

To summarise - Remember the 5 R’s

Recognise The symptoms of overload

Remove Yourself from the situation

Reduce the stimulus causing the overload

Relax Your body and calm yourself down

Rest Yourself as you will most likely feel fatigue.]

If you can separate the KKK and Westboro from Christianity then you should be able to separate ISIS from Islam

If as a muslim I can separate everyday americans from the terrorists who dropped 23,144 bombs on muslims ONLY last year, if as a muslim i can separate everyday americans from the americans who condone the murder of 500,00 innocent iraqi children, if as a muslim i can differentiate between everyday Russians and the terrorists who’ve been dropping bombs on fasting already weakened muslims located in syria this ramadan , if as a muslim i can separate westerners from this white man who assaulted an innocent muslim (one of the many many brexit hate crimes towards us), this white atheist who gunned down innocent muslims, these french mosque burners (as a french muslim), this white american who tore a hijabi’s hijab off , these three white men who beat up a man who was simply walking to the mosque to do his daily prayer, or this american and these islamophobes I damn well hope you can also start differentiating between us true muslims and our own oppressors  who by the way are not even muslim.

Rant time.

If I read ONE MORE “food is medicine”- “you are what you eat” post on my social media accounts, I am going to erupt in a volcano of rage! Some unsuspecting ableist is going to be blindsided.

I have seen so many of these shitposts lately, and they’re getting on my last nerve.

Usually, they come in a captioned-photo format featuring images of like, kale and high-fibre leafy greens.

Really? Really, people?

How about this; if you are truly in a position to believe that food and dietary choices are fully responsible for a person’s good health, or lack of it, does it not strike you that you are the holder of “knowledge” that you know, maybe DOCTORS would be aware of, if true?

Here’s what you actually are; INCREDIBLY lucky. Thank your lucky goddamn stars that you do not deal with any serious health issues, and kindly shut up.

Yes, diet impacts health, but food choices do not “cure” or “cause” chronic or critical illnesses. If you do not have an illness, you do not have an opinion.

If I just stopped taking my medications, and ate the foods pictured in many of these posts, I could quite literally tear up my intestinal tract, or obstruct, and end up in the hospital or worse. Do you think the doctors there will just prescribe more kale and send me home?

That is ridiculous.

Here’s a tip: If you are not ill, you have the PRIVILEGE of good health. Be that due to good genetics, timing, or general luck, keep your PRIVILEGED mouth shut before you sit on a high horse behind your keyboard and condemn those who ARE ill to suffer because “they don’t eat their medicine.”

I WILL CALL YOU OUT AND SHAME YOU PUBLICLY.

Thank you.

I’ve been told by my doctor that I shouldn’t try and switch to any extreme diets. Very gradually reducing fats and very gradually increasing veg is all he recommends to any of his patients.

1.7

Guess my look says it all. My own doctor is on holiday so my tube was placed by a different doctor.

The tube was placed using the wrong method (if the easy method was an option we would have done that the past few times) so it’s not in my jejunum, but barely in my duodenum.

This means that the formula will end up in my stomach which is what we’re trying to avoid in the first place.

They also put it in the wrong nostril and look at how short it is.

It is completely useless like this so now I have to pull it out and hope that it will still work after that :s

#tubie #njtube #gastroparesis #sondevoeding #neussonde #chronicintestinalpseudoobstruction #cipo

Oh that sounds miserable. :( A pox on doctors who don’t listen!